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Well Into Recovery

A family credits recovery from schizoaffective disorder to relatively early intervention, the right medication, never losing hope and a great therapist

From The Quarterly, Spring 2013

Recalling her son’s last year in high school, Stamatia Pappas can still, ten years later, feel her eyes fill with tears. What might have seemed at first to be simply a high school senior’s bad case of "senioritis,” turned out to be the early rumblings of an approaching cataclysm. She watched as her son, the boy who loved books, suddenly could not concentrate on reading. Until then always an able student, he came close to failing his courses. A passionate music lover, when given a senior-year “dream internship” with a music company, he sat, paralyzed, on the curb outside the company building or hid himself in the men’s room.

Stamatia supported her son as best she could, even while she didn’t understand what was happening. Her son somehow managed to complete the credits needed to graduate from high school and went off to college, but the following fall, two weeks before Thanksgiving, the family received a call to come and get their son. He was failing his classes and wandering the streets and needed to be taken home. By New Year’s Eve of that year, he ended up in an acute care unit.

Overt psychotic symptoms typically appear in late adolescence or early adulthood. As a child spirals out of control, distraught parents often find it difficult to find appropriate help or even to get a definitive diagnosis, as happened here.

Says Stamatia: “He was discharged from the hospital with medication that clearly wasn’t working and told he should just follow up with a psychiatrist. We were told that he wasn’t psychotic, that the problem was his relationship with his parents. It wasn’t that long ago and we were still getting this type of explanation.”

The next episode was unambiguous—and terrifying. Home alone, with her husband off on a business trip, Stamatia tells about how her son went off to a friend’s house “and spent the weekend smoking pot. When I finally reached him, he begged me, ‘Mom, you have to come get me right away.’ While we were driving home he was pounding his body against the dashboard.”

Taking their son to be hospitalized was an excruciating choice, but there didn’t seem to be any other options. Over a course of three months, the Pappas family painfully watched as their son got treatment in the hospital, but went through a number of antipsychotic drugs that failed to help him get better and in some cases made him considerably worse. He was finally stabilized on clozapine (Clozaril®); a second-generation antipsychotic pioneered for treatment of patients with resistant schizophrenia by Herbert Meltzer, M.D., with the support of a NARSAD Distinguished Investigator Grant. Once stabilized, their son was able to go home.

Right around when her son was released from the hospital, they also finally found the right therapist. "I knew she was the right one when we met and she said to me, 'Mrs. Pappas, we’re all going to dance at your son’s wedding,'” recounted Stamatia.

The recovery was slow and not always steady, but eventually her son was able to go back to college, not far from the family’s home, beginning as a part-time student and then completing the program and earning his bachelor’s degree. He completed a certificate program in art therapy, is working at an organization where he is helping two young men with autism spectrum disorder, and hopes to eventually earn a master’s degree in music therapy.

Stamatia has also found support for herself as she continues to support her son’s recovery. She is a member of NAMI, the National Alliance on Mental Illness, where she is currently President of a chapter and an instructor in its Family-to-Family program. The conference session in which Stamatia shared her story was titled “Early Intervention, Rehabilitation and Reintegration.” The NARSAD Grant-supported scientists who spoke on the panel with her described what researchers are now learning about the crucial importance of treatment early on in the course of mental illness for preventing or minimizing the progression of disease.

While the process of dealing with her son’s illness has been painful and perplexing, rife with setbacks early on, Stamatia considers her family lucky. They were able to find the right treatments relatively soon after the onset of illness and she believes this has been crucial to the whole family’s recovery. She has heard so many stories of other, less fortunate families. “What has helped our son is a combination of things,” says Stamatia. “He is on the right medication, he is determined to stay well, has a family that never gave up hope and a great therapist. I look forward to dancing at his wedding!”

The Pappas family supports the Brain & Behavior Research Foundation because of the work funded to better understand what causes mental illness and to develop effective early intervention and diagnostic techniques.

Article comments

Can you please tell me how you went about finding "the right therapist"? I would be very grateful.
Thanks so much for your story. It parallels very closely that of my brother, although he wasn't lucky enough to get good treatment early on.

My son also suffered from these symptoms and is on olazapine but is showing signs of depression i want to change his psychiatrist but not sure how to go about maybe you can shed on light "the right therepist"

Hi. What dose of olanzapine is he on? Is he on generic or original?
I have been on original since 1997. I take only 5 mgs.
When I up the dose I get depressed.
I also get depressed and have other side effects with anti-epileptic drugs.
The feelings I get are hard to explain and if your son has them he may feel shame or not understand them as a side effect.
I am a fifty year old female.
I have failed on many meds.
I suggest slowly cutting his dose in by 2.5 at a time....to see if it actually improves him.
I am not a doctor or expert of any kind....
However I have been in multiple research studies and each time I try something new ....I get worse, not better.
Also could you be mistaking drowsiness for depression?
If so, lower the dose by 2.5 every three months to see if the sedation lifts.
Again do this with his doctor.
I went to the school of hard knocks to learn this.
Oh! And generics can be different trying different brands of olanzapine might help.
I have schizoaffective and have never been an addict or smoker.
Give his psychiatrist a chance to help you and your son.
Switching just puts you back a square one!
At least he knows your son and can evaluate him as getting better or worse.
Remember the more input you give and support you show...the better it will be for your son!!

This is a familiar story for me also. I firmly believe the key for recovery is the supportive family that provides a safe, low stress environment for the time it takes for the brain to heal. I feel that this is what most helped my son. Even my severely schizophrenic brother functioned so much better during a period when he was lucky enough to be in a group home with that environment.

I also really appreciate the honest statement that many of the drugs did more harm than good. I personally feel that two years of medication cocktails hampered my son's recovery. He is now medication free and finishing a second college degree.

Wow. I am so amazed with this story. I so wish my older brother would have received this type of support from the beginning of his condition. Now, he is finally on a medication that has worked with him;however, as a family we are still trying very hard to motivate him to get more involved and gradually work or go to college. What advice do you have?

I was diagnosed with schizoaffective disorder and had paranoid delusions and extreme depression with suicidal ideation. With a supportive family member and a passionate ACT team I was able to get back to a place where I could get up in the morning and go to work. I take a mood stabilizer and an antipsyhotic and was on ECT treatments which recently were stopped. I have my bad days, but things seem to be getting better and with support in place it makes all the difference.

I am very happy for you. I have a 32 year old son with the same illness. Although he received immediate care and therapy at 17 years old, his progress was not as good. He has periods of stability and periods of relapse.

Every time that I hear of someone's child having one of the more serious mental illnesses, I am very sad because I know what that family (and child) will likely be going through and it is not for the faint of heart.

So it is great to hear good news that someone's child is doing well. I pray for the day that these illnesses will be curable so that no one else's child and no one else's family has to go through what we have gone through. Good luck and continued success.

We have no choice but to use a Medicaid health system which is sad and tragic. Every single hospital we have gone to has horrible , uncaring, demeaning nursing staffs. We found one doctor that was adequate but he moved! Now our son sees a Nurse Practitioner that is so inept that it's scary! Our son has all but given up due to the poor medical attention available to him.

I have practically the same story with my son, he is in this condition at the age of 15 and now at 28 he is still on medication, as a family we are also trying hard to motivate him to carry on in life, he is not having any pyschotic episodes, staying calm but unable to focus for his future. What advice can you give me as I have gone through lot of therapist and none has been able to help him in the correct way.

Re: finding an optimal therapist...as we know, that is more art than science. A desperately ill person won't open up until they find someone they can relate to, but practically speaking, can't interview prospects. I heard about a project to help therapists start a professional social network where they can post video clips of them talking about their credentials and approach to therapy. Prospective patients could view and seek a match. Does anyone know more about this, and whether there's more that can be done to get it off the ground from a grass roots level?

My son now 18 this week we have just noticed severe mental issues talking like it isn't him. He wentwith his friends on a severe drug run and I feel something he did was bad. I have a brother who is schitzophrenic and medicated. Never has and never will work. He is 45. My son has similar symptons but is not severe. He has a loving Christian home. My question is some schitzophrenic activity drug indused or is it something someone has all along?

Our son was diagnosed in 2008 (18 years old) with paranoia -schizophrenia; looking back at age 14 years he had begun the symptoms of disorganized schizophrenia, at that time we did not understand. he never did drugs....his illness began at age six as result of ongoing stress at primary school due to bullying-trauma. But having changed school he made improvement at least we thought so until he was re exposed to further stress during his teens, academic demands and repeat bullying.Five years after 2008 after being medicated with several anti-psychotics Risperdal, Zyprexa, Solnium, he was given Clozapine 2010. He made no progress regarding his paranoia and became depressed (with negative symptoms). During his five years of so-called recovery treatment he was given one therapist for six months (2009-2010) which he refused to see thereafter in the fall of 2010, all the time we tried to convince him to seek another therapist but he refused and his psychiatrist did not believe that the CBT or and form of therapy would help him since he still had paranoia..... This year 2013 his was taken off Clozapine suddenly and treated with a new drug Paliperidone palitate, two months later his symptoms are just as bad and his cognition worst, he attempted suicide at home, now he is in hospital as an involuntary admission patient. His cognition is much reduced, ......we don't think a therapist will help now; we have lost all hope for his recovery. is there any chance his brain can repair itself if the right medication is found? Should a therapist be involved at this point? We wonder how much damage to his brain is due to the illness or to the medications that he has been exposed, and sudden stopping of each one, surely that can cause trauma tot he brain!

Dear Maddock,
My heart is saddened by your son recovery history. The one thing I can tell you is to NEVER give up. You are the only ray of light your son may have right now. Recovery is a slow slow process. My son was first diagnosed at age 20.Can't tell you how may different drugs, doctors & therapist we have gone through......it boggles my mind!!! Now at 34 he is stable, has found medication that keeps him somewhat in balance but he does struggle everyday...God love him.
I do believe the brain can heal itself......I have seen my son so sick that I could not even image that he might improve. It takes a whole family to help and it is exhausting......I always try to remember how bad it must be for him when I am feeling overwhelmed myself. Please don't give up. Find support for yourself. I will be sending positive thoughts your way.

Ive read what you have written and i can feel your heartache and I hope by now your getting some answers to your questions…..I know what your going through my son could be your sons carbon copy …..from all I'm learning and seeing there is no magic drug or cure…..what Ive come to learn is keep trying and you have be very patient….the brain takes forever to heal if it does at all….from what Ive seen in my son is he's best when he's left alone to heal…..take the med's and let them sleep sleep and then more sleep…I've come to except this part….when he's sleeping I'm at peace that in his sleep he's at peace the voice's are gone his paranoia is gone and he himself has said he feels free….one day it will change and one day soon there will be a cure till then take care of yourself and just love him our sons though we may not realize it our sons teaching us a lot about life….

My 26 year old son is an addict and mentally ill - currently on suboxone for drug cravings. He has been on and off of medicine and won't go back on any. He doesn't think there is anything wrong with him. He hasn't been officially diagnosed, but is schizoaffective i think. How do you get them to seek help, listen to a doctor and take medicine. He doesn't listen to reason, is in denial and cognitively affected.

Hello,
My son will turn 24 this July. Several months after turning 22 the paranoid schizophrenia started out of no where. If anyone knows of any serious studies or test programs with possible break throughs please contact me. My son Brandon has been diagnosed as Schizoaffective/Bipolar. We heard of some studies in Australia but we were told they were in beginning stages. Please help with any studies our son may participate in...Thanks,

My daughter who is 16 was just diagnosed correctly as Schizo-affective. She also has severe cognitive disabilities, intellectual retardation, anxiety with the schizo and possibly a biological uncle with the disease. We adopted her as a newborn. She started having these "breakdowns" I call them in 6th grade. At the time they were short lived and first she just started with not talking for weeks at a time. By eighth grade she was hallucinating and displaying manic behavior. I'd keep her home for days and the school would threaten to call the truant officer. She attended highschool and was very excited to be there until kids started bullying her and ignoring her. I pulled her out of school around Easter that year, found a doctor who will listen and who diagnosed her correctly. My question is...are they better off going to school or at home? She does sleep all day so I don't know if less sleep will trigger more "breakdowns".

Could you please let me know your son's therapist? My son has a very similar story as your son. He was just release from psychiatric emergency last month. The psychiatrist put him on different medicine and none of them seems working on him. Please help me!

Hi Carol in my experience with my son it takes around 3 to 4 months for the medications to start working and the Doctors up the dose slowly to find the amounts needed to stabilise. Maybe you just have to wait a while longer to see if the drugs are working.I wish you and your son well, this is a painful journey.

I am so moved and uplifted by all the families and stories. My son was diagnosed last year schizoaffective. He was a brilliant GT, honors, athletic, enlisted guy, so much love and potential, and it all slowly came to a halt and a break last April. We are trying to find the right meds. I pray to take his cup, let me suffer it, not him, he is so young and has a full life ahead of him. I hope to build up a strong awareness and community across the states, generations, diversities. I believe that all together we can support, share and help one another, our children and our families. Please keep posting, I do not feel so alone. Thank you

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